Collaboration for Academic Primary Care (APEx) Blog
Collaboration for Academic Primary Care (APEx) Blog
Posted by ma403
5 December 2023The OECD International Survey of People Living with Chronic Conditions (PaRIS Survey): development and evaluation of the patient questionnaire – Dr Ian Porter
The presentation was on an international project which Exeter has been at the heart of, the Patient-Reported Indicators Survey (PaRIS Survey*) of People Living with Chronic Conditions. The genesis of the project was in 2017 when Health Ministers of the Organisation for Economic Co-operation and Development (OECD) Member countries mandated the OECD to produce comparable cross-country indicators for patients’ medical care experiences and self-reported health care outcomes.
Exeter is part of The PaRIS-SUR Consortium** supporting the development and implementation of the PaRIS Survey, which had a ‘kick off’ meeting in Utrecht in 2020. In Exeter we have led on the development of the conceptual framework and patient questionnaire, tasks critical to the success of the project, which involved extensive engagement with international stakeholders to ensure the project captures what is important to patients with chronic conditions. A 118 item questionnaire was produced for adults, aged 45 or older, with one or more chronic conditions, who use primary/ambulatory care, including modules on: experiences of health care (PREMs), perceived confidence in managing their health and care, perceived health outcomes (PROMs), along with background characteristics.
In 2022, 18 countries participated in a field trial across four continents. National project managers (NPMs) worked with the PaRIS-SUR Consortium, OECD and national stakeholder groups in the multi-level design and implementation. Primary care practices were identified at random (stratified) in each country and patients aged 45 or older seen in each practice were also randomly selected. Psychometric evaluation at the item level (missingness, distribution of responses, ceiling/floor effects) and scale level (reliability, structure, validity) guided changes for optimising data collection and instrument performance. Refinements were also made based on feedback from NPMs and Working Party members.
Out of 11,999 patients providing consent, 10,894 completed the patient questionnaire (91%). Only five questions (out of 118) had >10% missing answers. The psychometric performance of measurements was largely confirmed, with only minor adjustments needed. Countries provided rich feedback on their experiences and proposed several improvements. A revised version of the questionnaire was produced with three questions removed either because they overlapped with other content or because scale reliability was preserved with the item removed. Four COVID-19 questions about vaccination status and concerns about care were also replaced with questions on symptoms and impact on activities.
The field trial yielded valuable lessons for the main phase of data collection, which has taken place in 2023 with 20 countries participating. In terms of next steps a Health Ministerial meeting of OECD countries will take place in January 2024 to discuss preliminary findings, followed by a flagship report which will be published in late 2024.
*Copyright 2023 Organisation for Economic Co-operation and Development. All rights reserved.
**Other PaRIS Consortium members: